Barb, I thought I read that the drug company that makes Gilenya was going to assist patients the way Amprya's maker did...
anyway, you need to go to an MS center and find a new specialist.
As If I'm telling you something you don't know...

Maybe I will be able to find a ms specialist if I move to Austin in 2012. At this point, I do not want to drive hours to go to the doctor. I assume that if they do have financial assistance, I would not be eligible or they would require a huge co pay. But I am not ready to try this one yet. I may be making a mistake, but I know how my body has reacted to all of these **** treatments.

Hi, I am new to this site and have only posted on the newbie thread. Still trying to figure out how to navigate!

I am going to go on the new drug Gilenya as soon as my neuro says it's ok. I have had the body scan, eye check, ekg, blood tests. Just waiting for the blood test results and instructions on what to do next.

Very nervous about the side effects. I rarely get sick (other than my MS) so I am not looking forward to the possibility of picking up every virus that comes along.

I will post back after I get started.

Lisa

Hi Lisa. Welcome home and much luck with your new Med. I hope it works for you with only good sides.

Hi Barb,

Good luck making your decision about Gilenya. Here is some useful information about the drug and the assistance program. I'm like you--trying to decide if I should try it now or wait it out and see how people do with it.

http://mscare.org/cmsc/Informs-Novar...-Programs.html

The assistance program by Novartis is not based on income--mostly you just have to have commercial health insurance and not be on Medicaid/Medicare.

Here is what I picked out of the link above.

# The Gilenya Prescription Co-Pay Support Program, which will cover a significant portion of prescription out-of-pocket costs for eligible patients with commercial health insurance.*
# The Gilenya Medical Co-Pay Support Program, which will reduce the out-of pocket costs associated with Gilenya initiation for eligible patients who require certain tests before starting treatment.**

*Government program beneficiaries and residents of Massachusetts are excluded.
**Government program beneficiaries and residents of Massachusetts, Michigan, Rhode Island and Minnesota are excluded by law and are not eligible.

I just read on some blogs that Gilenya is paying everyones co-pays until 12/31/11. So that's a year+ of free meds.

If you move to Austin (Texas I assume?) I've heard this MS specialist is the guy to see. He is in a suburb of Austin.

http://austin.citysearch.com/profile...is_clinic.html

Thanks Natalie for the information. I am going to copy your post so I remember the name of the doctor. I still plan on waiting until June when I have my next MRI before I make a decision.

If Gilenya’s ingredient (fingolimod) costs $14 a month, why is Novartis wanting $4,000 a month for it? Check it out. Google "buy fingolimod" and you will find several companies that sell fingolimod for non-human research (so more applications can be found). At one company it costs $42.00 for 50mg. The Gilenya website says that the pills would be 0.05mg each day. That's about 15mg a month. Simple math shows that we could all get fingolimod for about $14 a month if we were allowed to buy it that way. Based on their projected price of $4,000 a month, that’s a 285 times markup!
Gilenya is a cheap fungal metabolite that has been used in Chinese herbal medicine. Read the research: The Immune Modulator FTY720 Targets Sphingosine 1-Phosphate Receptors9, The Journal of Biological Chemistry, Vol. 277, No. 24, Issue of June 14, pp. 21453-21457, 2002. You'll find it online in pdf form. Novartis is the sponsor of the study at the college.
It is also my opinion that the $4,000 a month was figured by adding a thousand to the average $3,000 a month of the other therapies. They figure that no needles are worth $1,000 a month. The company line is that they are offering co-pay assistance. Of course they are! At $4,000 a month they can give out half-price coupons and still make a hefty profit. Another company line is that insurance will cover most of the cost. With 40% of Americans not insured, I wonder how many people with MS aren’t able to afford any therapy at all. My co-pay for Copaxone WITH my insurance is 25% or $777.10.
As much as I hate needles and as good as the product predicts to be, I suggest we all boycott Novartis’ Gilenya until they lower their price to at least $1,000 a month. That's still exorbitant but they do have the clinical trials and their research to pay for. If half of the people with MS bought it for $1,000 they would recoup their money fast at over $166 million a month (175,000 people X ($1,000 -$50 costs)). Of course, all of the other MS therapy companies would be upset but if all of them have been setting their prices based on what the others are getting, it’s called price fixing. They call it marketing. For us it’s called crippling.
Gilenya is not an expensive biologic like Betaseron. I did use Betaseron and got drug-induced Lupus and had to change to Copaxone. At least Betaseron uses the overies of Guniea pigs (in China) and that requires high manufacturing costs (and yuk!). I can almost see the large manufacturing cost for Betaseron and other biologics but it looks like all of the other therapies base their price on Betaseron’s high price. I think the drug companies are really taking advantage of the fact that there is no cure and they’ve got us over a barrel.

Man, I did Rebif for years 2000-2004 which I hear came from Chinese Hamsters (?)and think it was $1500 a month. I had good insurance then, paid nothing. When a compounding pharmacy made my generic fampridine, it was $31 a month. Hear it's in the thousands now.

What can I say,,,,,BIG Pharma improved it and they want their money back..

They say they are asking for the "research value" of this drug, and not the actual production value. Based on studies of how expensive it was to get this drug to market, they want to be reimbursed for the cost it took to get it there. isnt it sad?

They will make BILLIONS of $$$ off of us this year, whether its an injectable or a pill or a cream or an IV infusion. They WILL be allowed to get away with it, and those with great insurance will get it, and some without insurance will get a limited supply and many will simply go without. They are NOT interested in curing or halting MS, they ARE interested in making money off of it. Sad, just sad.